CF Realities in India

Living With Cystic Fibrosis

We need to education and come up with solutions to help the people of India with cystic fibrosis.

Facts of CF in India:

There are 40,000 people diagnosed with CF in the U.S. and 70,000 worldwide, but the Bonnell Foundation is certain those numbers are low. CF doctors in India and the U.S. believe that there could be between 35,000 and 140,000 people with CF in India (India has a population of 1.4 billion). The life expectancy in India for someone diagnosed with CF today is between 7 to 12 years old. If you live into your 20's that is considered old. Dr. Sneha Varkki says she loses a patient every month to the disease.

Dr. Grace Paul works from the U.S. to help people with CF in her native land. She helped train and continues to support Dr. Sneha Varkki. There are no CF centers, no newborn screening, no health insurance. The government doesn't recognize the disease yet. Infants are dying of malnutrition before they can even be diagnosed with CF. The solution: education and getting all parties to work together on all the challenges people with CF face.

Dr. Grace Paul, is an associate professor of pediatrics, and a faculty member in the Division of Pulmonary and Sleep Medicine at Nationwide Children's Hospital for the past 10 years. Dr. Paul completed her medical education at Christian Medical College in Vellore, India, followed by pediatric residency at Case Western/MetroHealth Medical Center in Cleveland.

Dr. Paul is passionate about global CF, with special focus on the diagnosis and management of CF in low-and-middle income countries. She is a member of the CF Foundation Global Advisory committee and was a member of the International Health Committee of the American Thoracic Society.

She has published, and is actively publishing on CF care in developing nations and is advocating for more cost-effective access to CF medications.

She and her collaborator -- Dr. Sneha Varkki received funding from the CFF to establish a CF center in South India and have been working hard to improve CF diagnosis and care among patients with CF in South and North-East India, and Bangladesh.

Dr.Sneha Varkki is a professor in the dept of pediatrics, Christian Medical College,Vellore,a large tertiary (ter-ti-ary) care teaching hospital in southern India. She completed her undergraduate and post graduate training in Pediatrics from the same institution and has been faculty in the department for the last 22 years. Her special interest is Paediatric respiratory Medicine, specifically Cystic Fibrosis.

From 2010, the team at CMC, Vellore has cared for around 200 patients with CF. With the help of a grant from CFF, and in collaboration with Dr,Grace Paul, last 5 years were devoted to spreading awareness about CF among medical professionals, training multiple allied health teams across India and educating parents of children with CF.

Parents live in fear everyday about their child’s life expectancy. Dr. Deepthi Raidu talks to us about losing her son, Shreyansh to CF. The median age of survival is between 5 to 7 years, living to your 20’s in India is considered old.

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